Of sex and science. Elizabeth Pisani's blog about HIV and other sundry things.

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Most people spend long summer evenings in Paris strolling arm in arm around the boulevards, sitting in cafes or lolling in parks. I spent this weekend in the sewers. Am I odd in finding drains a sexy subject? Perhaps. But they’re my number one candidate for a Song of Contagion.

I’m lobbying for a diarrhoea story that starts in 1830 and tells the story of poo-related deaths in London and Calcutta. The British and the Indian music will start off at the same volume because back then, diarrhoea was killing roughly the same proportion of the population in those cities. Then in the 1850s the British music gets deafening — that was the Big Stink and the cholera epidemic that followed. This rattles the Victorians into action, and they start to build drains — represented by the introduction of a didgeridoo as a bass-line to the British music (I’m hoping for a dij because it both looks and sounds like a drain…) As a result, diarrhoea deaths in London plummet. While the dij bass-line carries on, the rest of the British music gets quieter and falls silent. The Indian music, on the other hand, never gets a bass-line. Neither the colonial government nor the many subsequent Indian governments have invested sufficiently in basic sanitation, and tens of thousands of children continue to die of diarrhoea in Indian cities to this day.

Whether this story gets selected or not is up to Tony Haynes and his song-writers and musicians in the Grand Union Orchestra. But it is also up to you, and whether you have better ideas about which diseases would best illustrate the different social, political and physical forces that shape our perception of the importance of a specific illness. In our current thinking, the list of parameters which affect our perception of disease fall into four categories. They look like this:

Other candidate diseases to be turned into a great musical stage show include HIV, shellshock-to-post-traumatic-stress, Zika-vs-dengue and rhuematism-vs-erectile-dysfunction. If you’ve got ideas for diseases that would make a good, data-driven song, e-mail us at info@songofcontagion.com. Or if you are in Oxford on June 20th, come to the Wig and Pen between 17.30 and 19.30 to share a pint and your ideas. If you’re in London on Monday July 11th 2016, Elizabeth is offering beer, pizza and a chance to get your disease on stage to anyone who wants to come along for an evening of brain-storm-draining. E-mail info@songofcontagion.com for time and place.

I’ve just emerged from three days buried in a bunker at the Geneva Health Forum, which focuses on health in lower income countries. There was a great cartoonist, but otherwise it was all quite po-faced: power-point presentations, incomprehensible posters and much thanking of sponsors. LOTS of rather earnest, mostly white people suffered from the Public Health Fallacy: the idea that if only they had the (technical) evidence, all governments would do the best thing for their poorest and most neglected. Despite all of the (historical, political, social) evidence (.pdf) that the poorest and most neglected mostly get, well, neglected by those that govern them.

I propose adding this to the evidence base: po-faced conferences with power point presentations to an audience that has seen them all before do not generate new ideas about inequality in health. And I propose trying something different: let’s put the technical evidence up against the historical, political and social evidence in a piece of music, and see what gets drowned out.

Does that sound crazy? Maybe. Will it change the world? Of course not. Will it allow us to think a bit more creatively than another powerpoint presentation in a bunker conference? Probably. Will it be a lot of fun? Certainly!

Come along tomorrow, Saturday April 23, and add your voice to the project, which we’re calling Song of Contagion. (It’s supported by the Wellcome Trust, and most of what they support turns out pretty well.) We’re meeting in Hackney, East London, to begin to decide which diseases to songify, and what, besides the technical evidence, we should be adding to the musical mix. The fact that the Minister of Health’s wife owns a Pharma company, maybe? We didn’t hear THAT at the Geneva Health Forum…

If you’re wondering about the illustration, I was in Geneva to discuss with colleagues how we might turn the asteroid field of public health data sharing into a nice, tidy solar system. Right now, if you played public health data sharing in music, it would sound so cacophonous that many people would just switch it off. To turn it into a symphony, we need to appoint someone to act as conductor, and start investing in more players in the orchestra. But that’s a whole separate post…

Today is World Health Day. Judging from what’s in the Song of Contagion Twitter stream (@songfocontagion), this is above all an opportunity for a lot of lobbyists and marketing specialists to promote their specific cause. Greenpeace has been quite active, because of course you can always make a health issue out of the environment.

There’s quite a bit from the Indian government, a lot of it focusing on diabetes (the prevalence of which, we will learn from The Lancet tonight, has more than doubled in India since 1980). But there are also Indian companies trying to convince us that ghee, or clarified butter, is good for us after all.

We’ve got single-disease NGOs all clamouring for our attention to “their” disease, often with recourse to statistics. This from the Mental Health Foundation for example:

Finally, you’ve got marketers of fads and gizmos, all capitalising on World Health Day.

All of this is part of the clamour that leads to really important decisions about what research gets done and which interventions get funded. (Oddly, I’ve seen little today from Big Pharma, who I thought would be all over Twitter — maybe they are promoting their wares through the NGOs and foundations they fund?) If you want to help us make sense of how much influence initiatives such as World Health Day really have, then turn the results into music, please join us on the Song of Contagion project. Details here of our April 23rd launch workshop — which will discuss how priorities are set in global health.

07/04/16, 10:23. Comments Off on World Health Day: healthy for lobbyists

Yesterday, during a visit to the thought-provoking Museum of the Mind, on the premises of the Bethlem hospital (still active but now renamed), I was reminded both how far we have come in the treatment of mental illness since the ‘Bedlam madhouse’ was first opened, and how far there is still to go.

At the entrance to the new museum stand the two statues which sat over the gates to the old hospital from 1676 to 1815: “Raving Madness” (pitcures above) and “Melancholy”.
When they were carved, these just about covered the range of diagnoses for mental illness. Many centuries later, we have a far better understanding of all the ways in which the mind can be ‘broken’, as well as the different manifestations of mental illness. Today, for example, is World Autism Awareness Day; although first coined by a Swiss psychiatrist in 1911, the word autism wasn’t used in its current sense until the 1940s, long after the building that houses the latest iteration of the Bethlem Hospital was built.

It made me wonder: how has the divvying up of mental illness into infinitesimally narrow diagnoses affected those who live with it? Have some types of mental illness or their manifestations become more ‘acceptable’ than others? Does that affect how much research we do into them, or how much treatment is available?

As subscribers know, I’ve more or less dropped off the HIV map in recent years. That’s in part because there are so many other interesting health conditions out there to think about. And that keeps me thinking about why some conditions are more fashionable than others, why some things that affect very few people (such as testicular cancer) get quite a bit of research money while others — dreary things like rheumatism that make life miserable for tens of millions — get hardly any cash at all. You can show PowerPoint slides about the mismatch until the cows come home, and no-one seems to take much notice. But what if we could communicate the inequities in global health in other ways. Through music, for example?

Now, with support from the Wellcome Trust we’ve got a chance to do just that. In a project called Song of Contagion, I’ll be working with fabulous, multi-ethnic East London based Grand Union Orchestra to develop a show which plays music in variations, so that you can “hear” the difference between health conditions — how much death and misery they cause, who’s affected by them, how much press coverage they get, and how much money. Eventually, we’ll put on a show at the iconic Hackney Empire. But to start off, I need your help. This isn’t a Kickstarter — it’s completely free! We just want people who are interested in the politics of health and disease, or making great music, or both to show up to fun, one-day workshops in London. The first, to discuss what should go in to the show, will be on Saturday April 23rd, 2016. The show will be shaped by your input. You get to choose the diseases that will be “played” and the factors that influence funding, which will be mapped on to music parameters such as volume, tempo and pitch. Will HIV sound loud and screechy? It’s up to you.